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Chronic Fatigue Syndrome / Myalgic Encephalopathy (M.E.)

Monday, 10 May 2010

M.E. is a seriously debilitating illness affecting approx 12,000 people in Ireland, with 70% of these people being undiagnosed. However it has been noted that there is a significant lack of awareness from the Irish medical community regarding the condition, leading to an exhaustive diagnosis for patients, and often doctors refer back to a diagnosis of depression.

It is ME Awareness Month, and at the end of the month professionals from the UK will come to Ireland in a bid to increase awareness. Many doctors in Ireland still do not recognise it as a physical illness, and follow the school of thought that it is a psychological condition.

Doctors often describe the condition as a mixture of physical and psychological factors, and one that is very difficult to get to the bottom of where diagnosis is a process of elimination. This is the general consensus among medical professions in Ireland and can be frustrating for patients. But is this an Irish problem and why do Irish people tend to go to the UK or across the border to get treatment?

Around 12,000 people in Ireland are thought to suffer from ME, now often diagnosed under the name Chronic Fatigue Syndrome (CFS). The exact cause of ME/CFS remains unknown, but research has shown that it can affect the immune system and nervous system of sufferers. Most patients experience a flu-like illness before the onset of ME/CFS. Patients with ME/CFS experience symptoms such as: disabling exhaustion made worse by even minor exertion, sore throats, impaired concentration and memory, headaches, disturbed sleep, dizziness, muscle and joint pain. Patients can experience a worsening of their symptoms, and overwhelming flu-like exhaustion, after activity which was previously well tolerated. A particular feature of the disease is that the condition waxes and wanes over time, and symptoms can fluctuate a great deal from day to day, or even within a day.

There is no known cure at the moment, though patients may be able to get symptomatic relief for some of the symptoms. While some sufferers do improve over time, others remain significantly affected and disabled by their illness, and have to carefully pace their activities in order to manage their lives.

ME/CFS affects men, women and children of all ages and backgrounds, though it is rare in young children and seems to first occur mostly to people in the 20-50 age group.

The Irish ME/CFS Association is a national all-volunteer organisation committed to helping all those affected by ME/Chronic Fatigue Syndrome (CFS), not just sufferers but also their carers and families. It seeks to promote greater understanding and awareness of ME/CFS in the general public, medical profession and related services. It is run entirely by volunteers. Membership is €15 per year and, for this, members receive a quarterly newsletter, which provides them with up-to-date information on ME research as well as informing them about the current activities of the Irish ME/CFS Association. Between newsletters, updates are provided by E-mail and text.

Many of the members of The Irish ME/CFS Association are also members of the free Internet service, MEChat-Ireland. This facility has both a chat room and an E-mail list, which people all over the country access regularly, both day and night. For those people not on the Internet, there is a telephone contact list, with over 100 names on it. MEChat-Ireland and the telephone contact list are especially useful for those people who can't make it to meetings for whatever reason (many people are left house-bound, some even bed-bound, because of the condition).

A free information pack and membership form can be sent to all enquirers. Phone 01-2350965, e-mail or write to P.O. Box 3075, Freepost F4439, Dublin 2.

General Background:

. ME/CFS is a real, often relapsing, debilitating illness, affecting up to 240,000 people in the UK (CMO 2002 figures), with similar rates of incidence in Europe, USA, New Zealand and Australia. No proper epidemiological studies have been done in Ireland, but the prevalence rates are presumably similar here.

. M.E. also affects children. In the UK there are estimated to be 20,000 children and young people with the illness - the incidence appears to be growing, and in some areas of the UK, two-thirds of the children who have Home Tuition have ME/CFS.

. Characteristic symptoms include:
a) muscle pain with physical and mental exhaustion following normal activities; quite different from what is normally experienced by healthy people
b) Unique to ME/CFS is the delayed recovery after physical or intellectual effort - recovery can take up to 72 hours
c) Cognitive difficulties (e.g. inability to concentrate, think or speak correctly).

. ME is recognised as a neurological illness by the World Health Organisation, and as a serious, chronic condition by the UK's Chief Medical Officer.
. Studies have shown that most sufferers are unable to work to full capacity, and that 25% are severely disabled with some house/bed bound

. ME has a huge impact on the lives of families and carers, but little, if any, support is available to them

. The cause of ME is still unknown, but 80% of sufferers report an infectious onset (which is why it is also sometimes called Post-Viral Fatigue Syndrome (PVFS)).

. No cure or effective treatment has yet been found.